(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@katemn

Janet, LOVE your spunk! By golly .. only WE can be the best advocates for ourselves .. trust our gut feelings .. and NOT give up until we find a doctor who will listen to us and is KNOWLEGEABLE about our disease! I’ll be really interested in what you find out about Bronchiectasis .. I know I was so intent on healing from the MAC that I have never paid enough attention to my Bronchiectasis .. despite it’s lingering effects .. and the continuing coughing! Let us know what you have learned! We are all on this journey together .. shared knowledge is powerful! Hugs to you and good luck with your appointments! Katherine

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This is the “other” Kathryn once again – now I know why I called the lavage a cleaning “duh” – I’m a French teacher – laver = to clean and un lavage is a cleaning. Voila!

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I didn’t pay attention when I cough, I though that was from my sinus allergy b/c I get the yellow stuff from throat. After reading all your post I realized its from my lungs. I can’t get it out overtime I cough. I never mention it to my palm. Dr. Thank you all for all your support. Praying for you all.

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@kwilbur

Thank you so much for your positiveness. I have not been officially diagnosed with this bacteria but my chest scans are showing indications. My doctor, who I trust and regard highly, has recommended chest scans every three months. When it comes time he will cleanse my lungs, as I understand with a saline solution and begin antibiotics. What concerns me so much is that I am told I will not be able to work for 16 months. I am on my own and have worked as a teacher at the same school for 31 years! And, yes, I love the kids. It makes me so sad to think I will have to stop – also risking losing my house.

This is the first time I have seen a site where other people talk about their experiences. I am sixty-four and am also working with a very proactive internist to help me through the weakness and weight loss.

Well, I guess this is the beginning of my journey. And I WILL keep educating myself. Very best, Kathryn

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Thank you for your story Shelby .. each positive story helps new people on their journey because it is so scary in the beginning. I was diagnosed in 2007 .. and it is important for us that have come out on the other side to let people know that it DOES get better!

I SO know what you mean about the coughing .. to this day in a theatre I mention to the people beside me that I have “a lung issue .. but it is not contagious” .. BECAUSE I don’t want them to be concerned that I have a cold or the flu. I want people around me to have a pleasant evening and for whatever reason I cough a LOT in close quarters .. OR when I talk a lot.

For me .. I had early menopause .. age 48 .. so I was long past menopause when I was diagnosed .. so this is a goofy disease .. seems like no rhyme or reason other than perhaps some genetic pre disposition plus compromised immune system in some manner.

I also take a daily probiotic and get plenty of rest after ending my antibiotics in May 2014 and clear my lungs twice daily. Again, thanks for your positive input! Katherine

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It is interesting how this disease manifests itself in different forms for each of us. While at the same time, we seem to share many of the same conditions.
After reading all posts for the past few months, I have noticed a few characteristics we all seem to have in common: we are mostly post menopausal females, and many of us also suffer from acid reflux and asthma. These must be recognized as predisposing factors in acquiring MAC/MAI in the medical literature out there. Another pre disposing factor must be postural, like scoliosis or my own poor posture after practicing dentistry for 30+ years.
Many of you have discussed coughing and sputum production, of which I have none. No coughing at all. Ever.

Kathryn, I found it amusing that as a French teacher, you interpreted “lavage” for washing/ cleansing. As a Portuguese speaker, I completely understand what you meant! And you were right, lavage does mean rinsing the lung tissues with a biologic saline solution and then culturing all microorganisms in that solution. Unfortunately, lavage does not actually clean out our lungs. I wish!
I am happy you are finding solace in this helpful group.
Katherine, Thank you for starting and monitoring this blog!
Liliane

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Liliane, we are all on this journey together and it has been SO heartening to me to see how our group has blossomed into such a caring supportive WONDERFUL group of people! It has just done my heart good to see how people have just jumped in to support and help each other on this journey .. adding any and all tips and information that they can think of .. never really know just what may hit some other person at just the right time on their particular journey! AND the wonderful part of this Forum is the number of posts and the fact that it is there forever for people to read to find help at the time when they are just starting their journey .. when they are the most afraid. Oh I so remember that time .. when I felt so alone and had NO source like this to turn to .. I so wish I’d had this Forum to turn to .. a “soft shoulder” to fall on as they say! So we can feel good not just in this moment when we are supporting each other .. but knowing that we are “playing it forward”! What more can we ask out of life than kindness to one another? Hugs to all! Katherine

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@cila

I didn’t pay attention when I cough, I though that was from my sinus allergy b/c I get the yellow stuff from throat. After reading all your post I realized its from my lungs. I can’t get it out overtime I cough. I never mention it to my palm. Dr. Thank you all for all your support. Praying for you all.

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We are together. And prayers do help. In just one week, I, personally feel so much better – in spirit – for the simple reason I can express to others my daily challenges. Obviously, we all need to pay attention to our own bodies but we are helping each other by sharing our experiences so we have better questions to ask when we do enter into conversation with our health care provider. Thank you Katherine and everyone who has entered this conversation. I admire and thank you! While it isn’t wise “to put the cart before the horse” as I have, learning and sharing has no price.

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@katemn

Liliane, we are all on this journey together and it has been SO heartening to me to see how our group has blossomed into such a caring supportive WONDERFUL group of people! It has just done my heart good to see how people have just jumped in to support and help each other on this journey .. adding any and all tips and information that they can think of .. never really know just what may hit some other person at just the right time on their particular journey! AND the wonderful part of this Forum is the number of posts and the fact that it is there forever for people to read to find help at the time when they are just starting their journey .. when they are the most afraid. Oh I so remember that time .. when I felt so alone and had NO source like this to turn to .. I so wish I’d had this Forum to turn to .. a “soft shoulder” to fall on as they say! So we can feel good not just in this moment when we are supporting each other .. but knowing that we are “playing it forward”! What more can we ask out of life than kindness to one another? Hugs to all! Katherine

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Katherine, what beautiful, rewarding words. You have made me happy for the first time in two years. I woke my sister up this morning (she lives in Texas) just to tell her I had a support group. It means so much. And I have gone to work for two days and I am still okay! How about that!

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@liliane

It is interesting how this disease manifests itself in different forms for each of us. While at the same time, we seem to share many of the same conditions.
After reading all posts for the past few months, I have noticed a few characteristics we all seem to have in common: we are mostly post menopausal females, and many of us also suffer from acid reflux and asthma. These must be recognized as predisposing factors in acquiring MAC/MAI in the medical literature out there. Another pre disposing factor must be postural, like scoliosis or my own poor posture after practicing dentistry for 30+ years.
Many of you have discussed coughing and sputum production, of which I have none. No coughing at all. Ever.

Kathryn, I found it amusing that as a French teacher, you interpreted “lavage” for washing/ cleansing. As a Portuguese speaker, I completely understand what you meant! And you were right, lavage does mean rinsing the lung tissues with a biologic saline solution and then culturing all microorganisms in that solution. Unfortunately, lavage does not actually clean out our lungs. I wish!
I am happy you are finding solace in this helpful group.
Katherine, Thank you for starting and monitoring this blog!
Liliane

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Thank you Liliane for interpreting my/our language!

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kwibur, thank you for the kind words! Your happiness and sense of support is why we all do what we do on this Forum .. it is why we keep coming back! Just as YOU will support new people when the time comes! I know you will! Sending you a Big Hug! Katherine

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Hello, I felt so terrified when I was diagnosed with MAC 4 months ago.  Like you my Dr. told me about the side effect of the meds, also she mentioned that some people can’t tolerate the meds.  I asked what will happened if I chose not to take the meds, b/c of the side effect scares me to take them.  I also saw another plum. Dr. to get a second opinion. Sure enought I have MAC and bronchiectasis, now I take the 3 meds and on my 3rd month. I have some of the side effect but its not what the Dr. said. She should have said that everyone react different on the meds, b/c our body are all different. It will get better just have faith. I will have you in my prayer just like i pray for everyone in this forum. I’m so thankful I found this forum and learned so much with everyone. 

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@katemn

Liliane, we are all on this journey together and it has been SO heartening to me to see how our group has blossomed into such a caring supportive WONDERFUL group of people! It has just done my heart good to see how people have just jumped in to support and help each other on this journey .. adding any and all tips and information that they can think of .. never really know just what may hit some other person at just the right time on their particular journey! AND the wonderful part of this Forum is the number of posts and the fact that it is there forever for people to read to find help at the time when they are just starting their journey .. when they are the most afraid. Oh I so remember that time .. when I felt so alone and had NO source like this to turn to .. I so wish I’d had this Forum to turn to .. a “soft shoulder” to fall on as they say! So we can feel good not just in this moment when we are supporting each other .. but knowing that we are “playing it forward”! What more can we ask out of life than kindness to one another? Hugs to all! Katherine

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And you will continue to be okay. Keep the faith. Keep praying and ask God to heal you and he will.

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@cila

Hello, I felt so terrified when I was diagnosed with MAC 4 months ago.  Like you my Dr. told me about the side effect of the meds, also she mentioned that some people can’t tolerate the meds.  I asked what will happened if I chose not to take the meds, b/c of the side effect scares me to take them.  I also saw another plum. Dr. to get a second opinion. Sure enought I have MAC and bronchiectasis, now I take the 3 meds and on my 3rd month. I have some of the side effect but its not what the Dr. said. She should have said that everyone react different on the meds, b/c our body are all different. It will get better just have faith. I will have you in my prayer just like i pray for everyone in this forum. I’m so thankful I found this forum and learned so much with everyone. 

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What side effects did you have? Just curious. And how are you doing?

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@cila

Hello, I felt so terrified when I was diagnosed with MAC 4 months ago.  Like you my Dr. told me about the side effect of the meds, also she mentioned that some people can’t tolerate the meds.  I asked what will happened if I chose not to take the meds, b/c of the side effect scares me to take them.  I also saw another plum. Dr. to get a second opinion. Sure enought I have MAC and bronchiectasis, now I take the 3 meds and on my 3rd month. I have some of the side effect but its not what the Dr. said. She should have said that everyone react different on the meds, b/c our body are all different. It will get better just have faith. I will have you in my prayer just like i pray for everyone in this forum. I’m so thankful I found this forum and learned so much with everyone. 

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I’m doing better now, I have some moments that I’m down and stomach cramp. With the help of God and all of you in this forum I’m doing much better than when I first got the diagnosed. I remember I think we almost start the same time about our meds. I’m glad you are doing great. I’m still learning about how to space my other pills that I’m taking. My acid reflux is out of control, my Dr. tells me to take it at night. I have to take empty stomach 1 hr. before meal and so the other vitamins. Thanks Sophie.

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Sophie, I can only speak for myself .. but with my Gerds .. I had to experiment but found that what worked best for me was to take my Aciphex as soon as my dinner had settled but AS SOON as I could BEFORE bedtime. So that by bedtime the Aciphex had time to take affect .. because with lying down in bed .. that is the time reflux frequently happens. So for me .. nope night time Aciphex taking did not work. Just experiment .. doctors do NOT always know what is best .. YOU will figure out what is best for you!! Hugs to you! Katherine

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@cila

Hello, I felt so terrified when I was diagnosed with MAC 4 months ago.  Like you my Dr. told me about the side effect of the meds, also she mentioned that some people can’t tolerate the meds.  I asked what will happened if I chose not to take the meds, b/c of the side effect scares me to take them.  I also saw another plum. Dr. to get a second opinion. Sure enought I have MAC and bronchiectasis, now I take the 3 meds and on my 3rd month. I have some of the side effect but its not what the Dr. said. She should have said that everyone react different on the meds, b/c our body are all different. It will get better just have faith. I will have you in my prayer just like i pray for everyone in this forum. I’m so thankful I found this forum and learned so much with everyone. 

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I take nexium 40 mg every morning. I wait two hours then take rafampin on empty stomach on Tuesday Thursday and Saturday. I take my other two meds on mon we’d and Friday evening around 7pm so side effects never interrupt my day. I sometimes get tingling in hands and feet and awful taste in mouth but I figure I’m n bed not ruining my day only last few minutes then wake up to a great day

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